The "Bodies" Left in Their Wake

I participate and lurk on lots of listservs and forums, and I am usually very interested in the thoughts shared by adults on the autism spectrum - about how they see the world now, about how they remember seeing the world when they were young, and about how they experienced their educational situations.  Recently, I had the sad opportunity to read what a variety of people shared about their experiences with special education.  It was, unfortunately, all bad.


Typical of the recollections shared, was that the time spent "in special education" was useless.  Often, it was damaging.  It wasted the youngsters' time, made them feel stupid, incompetent, "less than."  So many people chimed in, on this one thread, about how horrible "special education" was.  It was such a sad thread, to me ... a testament to how badly special education services are being provided to children.  If children are being automatically placed in "slow" classes, merely because they have special learning needs, we are doing them such a grave disservice.  So many of those children are bright, capable people!  They need to know that it is because of their inherent strengths that they will be able to overcome the struggles that they also have.  They shouldn't have to choose between the supports they need and their self esteem.  It shouldn't be that children can either be in classes that acknowledge and challenge their intelligence, or receive the supports that their learning or other disorders demand.


In some schools/school districts, it seems there is a definite misunderstanding about what special education is supposed to be.  Special education is neither a class, nor a curriculum.  It is supposed to be individualized for each student.  Just because a student has special education needs, does not necessarily mean that s/he should be in a classroom with all the other students with "special education" needs.  Those needs could be (in fact, probably are) very different from each other.  The needs cannot be properly addressed by putting all the students into one classroom.  Many student (some would argue "most" or "all" students) do best by being in the general education classroom, with some supports in the classroom.  And each of the students need to be in a class that meets the academic needs of that particular student, so if a student is a strong math student, s/he should be in a math class that will prepare him/her to advance appropriately in math, and to be engaged and challenged, rather than bored and frustrated.  If a student needs remediation in one subject, it does not mean that s/he needs remediation in all subjects - in fact, it is rare that someone with special needs (or anyone at all?) has "even" level of skills in all areas.


So now, all these young adults, with these horrible memories of special education, are opting out of "special education" for their children.  Is it the right choice?  Are most school districts still making the same mistakes that those young adults experienced?  I can't say.  For my son, that is not the case, and I know I'm very lucky for this.  My son is in an "approved private school."  I am not a big believer in "inclusion."  For some students, it's great, but for my son, it would not have been, and the approved private school he attends has been wonderful.  He receives a high level of academics (which he needs), and the social supports he needs, and the extensive supports he needs for writing - the one academic skill where he struggles ... unless it is a topic that is self-chosen.  Are there trade-offs?  Of course.  His "pool" of potential friends is very limited, since the school is so small, and the student body includes many who would not be appropriate choices (there is a wide age-range, and a wide functioning level).  But for my son, that is not the primary concern - all he needs is a couple of friends, and he has them.


But back to the rest of the student population.  If there is a whole population of students coming through whose parents won't allow them to receive the services they need, because they, the parents, received such poor services when they were students, what are we doing to our children?  It is so necessary to demand of our schools that they truly provide the free appropriate educate (FAPE) that is mandated by federal law (IDEA).  Refusing services, rather than demanding good services, is not the answer.  The special needs of these children won't go away simply by refusing services.  The children will continue to struggle - they just won't have the supports to which they are entitled.


The better school districts aren't providing "one size fits all" special education.  That's really the bottom line.  The school districts that are need to be stopped.  Until that happens, the damage they are doing is multi-generational.  When someone, or something (like a school district) injures a child, it is never "just" that one child who is injured.  It is that child, that child's family, and that child's children.  The ripple effects go on for longer than anyone can predict.

How About "Inclusion as Appropriate?" or even as Desired?

I was reading another blog, and the issue of inclusion was being addressed ... again.  Inclusion is one of those topics that keeps getting talked about - over and over and over ...  The concept is so seductive, but the reality is so disappointing.  Most parents who wind up placing their children in appropriate private schools find that they are very happy with those placements -- that their children are happy, they thrive, and that life is better not only for their child, but for the whole family.

I have never fully accepted the hypothesis that inclusion is "best." Certainly, it is for some students - but not for everyone. And I don't buy the assumption that severity of disability necessarily determines the ability to include successfully; some severely disabled students can be successfully included, while some less severely disabled cannot. I think it depends more on the nature of the disability, the manifestation, and how the student feels in the mainstream environment.

For some students, private placement afforded them the first opportunity to feel safe, and to feel like they were in a true peer group. For others, it was the first time they felt like they had teachers who understood how to teach them. Many students feel "normal" for the first time when they are in private placement. When a student's energies can go toward learning, making friends, and experiencing school the way we expect typical students to do, isn't that a benefit that we want for ALL our children? If our children can do that by being in schools that are designed and equipped to provide that experience for them, and to teach them how to advocate for themselves so that they are able to "face the world" when they move on to their next stage in life, isn't that what we ultimately want for them?

If we were discussing anything besides education, there would be no discussion: if you needed a lawyer, you would look for a specialist; if you needed medical attention, you would look for a specialist. Why is it considered "wrong" for parents to want the educators of our children with special needs to be specialists in the particular needs of our children? Why is it wrong for us to want EVERY TEACHER our child deals with to understand our child's educational needs? We don't want just the "autistic specialist" to know what to do; We don't want just the "SED specialist" to know how not to say things that could trigger a crisis in a fragile child.

I am tired of being asked why a certain support can't be provided to a child within a mainstream classroom - the particular support may be able to be provided, but the kind of environment a child needs cannot be magically provided. Inclusion is a wonderful concept - as a concept. It works for many children, with many diagnoses. It does NOT work for everyone, and it should not be expected to. The current push to do so is completely ignoring the individual needs of the "I" in IEP, for the sake of educational theory/philosophy. It is at a horrible cost for those who are being sacrificed on the alter of philosophical rigidity.

Parenthood, Giftedness, and Isolation

Like pretty much everyone, I've been watching the tv show, Parenthood.  There was a lot of buzz when the show first started, about Max, the boy with Asperger's.  Was he portraying the child realistically (yes)? Were his parents doing a good job of showing what it's like to parent a child like Max (also, generally yes)?

Some more interesting issues have come up, and been less discussed.  The extended family's ways of dealing with Max, and their ability to recognize the realities of his needs, have been interesting.  In particular, the grandfather's perspective, which tends to be a combination of denial and self-centered irritation at the very idea that he might have to inconvenience himself for the sake of his grandchild, is all too familiar to parents of children with autism spectrum disorders.

Another interesting issue was the appearance of the therapist who was, almost miraculously, able to help Max do things that his parents had not - play games at home, interact with other kids at the playground ...  The mother feels inadequate and talks about how easy the therapist makes it all look.  The therapist basically chalks it up to not having to be with him all day.  I found it irritating.  Therapists work long and hard to get the results that they showed in basically no time at all.  It doesn't happen immediately!  Learning social skills, learning to apply them, and being motivated to try, is time-consuming work.  Children learn these things by taking baby steps, not by going to the park one day and having a perfect total experience.  I really wish that, when they show that therapy can help, they were more realistic about the work behind it.  The way this was shown, it looks like "if the parents had just" ... been more persistent? been smarter? been firmer with Max? known what to do? ... they could have done it easily.  Having the reassuring therapist comfort the mother doesn't counter that impression.  It just makes it look like therapists will make the inept parents feel better that they didn't do a better job.  Autistic behavior is not caused by bad parenting.  The fact that therapy helps doesn't mean that the parents are bad parents.  Parents, faced with an unusual developmental situation, need guidance from people who understand it.  The usual advice, from well-meaning but clueless family members, is useless.  

But the issue I was particularly intrigued by was the issue that came up when one of the other couples was concerned about their daughter and sought some support from Max's parents.  They had their daughter evaluated (it all happened SO fast!!!), and it turned out that there was "nothing wrong, she's just gifted!"  I was hoping there would be some follow up on this, but so far, there hasn't been.  There was some awkwardness about "breaking the news" to Max's parents and Max's parents talked about how they kind of hoped that their niece did have some issues so they wouldn't feel so isolated, but two more episodes have aired, and there's been no more conversation.  I'm disappointed.

First, this isolation that Max's parents feel, even in the context of this great, close extended family, is an important issue.  Parents of kids with special needs often feel like we are living on the outskirts.  Our brothers/sisters/parents generally don't really know how to deal with our kids.  They keep a bit of a distance.  They say stupid/hurtful things.  Sometimes they realize it; more often they don't.  In our communities, we are similarly isolated.  Our kids are "those" kids.  When we are lucky, we find each other, and then we talk about IEP's, NOREP's, sped directors, ESY, and all those other things that the rest of the parents don't understand.  It's a different language, different everything, from what they other parents talk about.  When you have typical and atypical kids, you have a foot in each world, but the isolation part wins.  If, in a family that is that close-knit, a couple can feel isolated, imagine what it is like in the broader community, where the other members of "your group" don't have the same kinds of bonds as they do in this family?  Isolation, among families with kids with special needs, is very, very real.

The other disappointing thing, for me, about labeling the other child "gifted" and dropping the whole story line is that this seemed like a great opportunity to do some myth-busting.  Too many people thing that "special ed" means children are stupid, and "gifted" means children need no special education intervention.  In fact, that is not true at all.  Studies have shown that gifted kids are more likely, statistically, to have special learning needs (besides the gifted issues) than are "average" kids.  Also, many kids with specific learning disabilities and with autism spectrum disorders are also gifted.  One does not preclude the other.  Some school districts try to force parents to choose between gifted and "special" education for their children.  That is an unreasonable and unfair choice.  When school districts insist on watering down curriculum in response to students' learning differences, they are not providing an appropriate education.  Students need teachers who can teach in ways they learn, not teachers who simply stop teaching because it's too hard.  That's wrong.  It cheats the students out of the education to which they are entitled, and it wrongly tells students that they can't learn things which they are capable of learning, but which they need to learn in ways that are different from the ways that other students learn.

Teachers need to be more flexible in how they teach.  We keep trying to teach our autistic kids to be flexible thinkers.  Well, we need to teach our teachers to be flexible teachers.  If more of our teachers could think more creatively about how they teach, and how their students think, it would benefit ALL their students, not only their special education students.  If that were something that was a routine part of teaching education, perhaps the concept of what is "good regular teaching" would expand, and more teachers would have the skills to teach a wider range of students.  Perhaps fewer students would be considered to be in need of "special education services" because "specially designed instruction" wouldn't be as necessary - many of them would be part of typical instruction.

Getting Started!

It's been a really long couple of months, in the education world.  I feel like I've been eating and breathing IEP's, NOREP's and all that other alphabet soup that special ed is made of.  School districts that talk about wanting to have open, trusting, cooperative relationships with parents set meetings but don't bother to tell parents about them.  They come to agreements at IEP meetings and send NOREP's that "oops!" didn't quite say what was agreed to.  When you say you need to have a meeting to go over the NOREP, since it didn't say what was agreed to, they look at you like you have three heads and claim that the NOREP NEVER says where the child is going to have a program, or that there will be a program beyond the 30 minutes a week ...


Yeah, an open, trusting relationship.  


It's tiring.


I talk to other moms, and they're tired, too.  But they're tired with their first child, with their only child.  I'm tired with my grandchild.  If I count him as a child, he'd be my fourth child.  I can't even count how many IEP meetings I've sat through.  I've never had a screaming match.  The meetings are always polite and professional, even when there are disagreements.  But not notifying the parent of the time and date, just because you're irritated that she's tired enough to bring an advocate?  Really?  What are the schools thinking?  How tired does a parent have to be, when the parent has to take off from work, again, and hire an advocate, to come to a meeting that should never have had to have happened, to get a NOREP that says what it should have said to begin with?


Parents of kids with special needs are tired.  We get less sleep than other parents.  We need to learn more than other parents - about the specific issues our children face, the educational systems we deal with, the legal system, sometimes the medical and/or psychiatric systems, the "special" post-secondary options, etc. We tend to have more responsibility for our children, who are less likely to have peer-relationships that allow for "shared" responsibility (kids with special needs are just not as likely to spend a day off from school rotating among friends houses so parents have reduced needs for alternative child care).  And with all this comes the emotional cost.  Our friends with typical kids don't "get" it.  They mean well.  But they don't get it.  So we find our real peers - other parents with kids with special needs.  We find each other, we gravitate towards each other.  There is a comfort level we can never find with the other folks out there.  We adore our kids.  We love them fiercely.  But we need to be able to talk to other parents who know in the core of their being, what it is we're talking about.  We need to be with people where we aren't anthropological specimens to be studied; or worse, anomalies to be feared.  And so, we sometimes pare down our worlds a bit.